The purpose of this project is to implement plans to develop the Health Information Technology (HIT) infrastructure in Tennessee to promote and improve the safety and quality of health care for Children with Special Health Care Needs (CSHCN). An electronic health record called Child Health Profile (CHP) is being developed for infants with disorders detected by the state Newborn Screening (NBS) and Newborn Hearing (NBH) programs. The proposed project will expand the CHP to include children with other genetic disorders and developmental disabilities diagnosed at the major Genetic and Child Development Centers in the state. The use of this electronic health record (CHP) by pediatricians and case managers will improve the quality of follow up and management services for CSHCN. The project goals include (a) expanding the Health Information Technology (HIT) infrastructure in Tennessee and provide the essential information to improve the safety and quality of health care for CSHCN; (b) providing accurate, comprehensive and integrated health and educational information on CSHCN by linkage of databases developed by providers of health and educational services; and (c) making available to health care providers (with parental permission) access to a secure web based integrated electronic health record (CHP) to ensure current information and continuity of care. The key partners in the project, including the University of Tennessee Department of Medical Genetics (Knoxville), University Health Systems, the Vanderbilt University Genetic Center and Center for Child Development, and the University of Tennessee Health Sciences Center (Memphis) Boling Center for Developmental Disabilities and Genetic Center, will leverage state resources to implement a comprehensive data linking and sharing network across the state to enhance the quality of services for CSHCN. The project is relevant because it will provide secure, accurate health information on CSHCN to authorized providers from a single electronic source, thereby improving healthcare delivery to CSHCN. Furthermore, the data sharing arrangements will allow developmental milestone tracking of CSHCN across the continuum of development from birth to adulthood and beyond. Success of the project will lead to further data sharing efforts between states and on a national level as part of Regional Health Information Organizations (RHIOs) and a proposed National Health Information Network (NHIN).
